Recently, a feature article in the Wall Street Journal highlighted the importance of making our wishes known at end of life. In addition, headlines in the news in November 2014 regarding the case of a young Oregon woman, Brittany Maynard, who elected to end her life because she had terminal brain cancer brought this issue to the attention of the public. It is a topic that many people don’t wish to face and therefore find themselves, along with their family members, unprepared.
I am a college professor and a practicing clinical pharmacist who teaches oncology to pharmacy students. Cancer is a difficult subject for students, because of its complexity, the concern over its diagnosis, and the preconceived biases of family members or friends with cancer. Students are generally afraid of this topic.
I began reading Being Mortal: Medicine and What Matters in the End by Atul Gawande, MD, MPH, to see if it would help students relate to end-of-life issues and patients who are facing their mortality. Although many patients with cancer can expect a good, positive outcome, a cancer diagnosis is associated with uncertainty, concern of recurrence, and the fear of death. In other words, a cancer diagnosis usually leaves us faced with contemplating our mortality. The irony, of course, is that with or without this diagnosis, all of us are going to die eventually, but we choose not to contemplate this inevitability.
This book is a great starting point for patients and family members to initiate this discussion. Indeed, it should be mandatory reading for all healthcare providers dealing with end-of-life issues. The information in this book can empower patients and their families to ask for more answers and more understanding of exactly what a person who is facing end-of-life situations should expect, and to seek the best possible quality of life for our loved ones in the end.
A word of caution: this book is not only about patients with cancer, and some sections may be long and less relevant. Maybe less than half the book is related to cancer directly; it is strictly focused on end of life, on how our healthcare system currently manages this topic, what is wrong with this approach and why, and offers potential options.
Dr. Gawande, a surgeon who has written several books about healthcare, uses scenarios and examples from his own practice, and even his own family, to highlight the challenges in dealing with end-of-life issues. He openly admits how unprepared the medical community is to handle these discussions with patients. He describes how uncomfortable he is when talking with his own father, as well as his patients, regarding prognosis, what to expect, and finally, how they wish to be treated. As a healthcare professional, I too have observed many doctors who avoid this conversation and are not prepared to discuss planning with their patients. I have observed many families who are uncertain about what their loved one would want when they can no longer make the decision for themselves.
In Being Mortal, Dr. Gawande provides an example of an oncologist who offers more treatments under futile circumstances rather than acknowledge that there is no longer a possibility of having a good response. The naked honesty of the family in this case, as well as the oncologist caring for the patient, provide us with a view rarely acknowledged in medicine. The physician openly admits his inability to have a frank discussion about the potential dire outcome when faced with a patient and his or her family’s undeniable optimism. It is easy to relate to both sides of this conversation, one of hope and optimism on the patient and family side, countered with a doctor who does not wish to bring any false hopes. When asked for the next treatment option, the physician reverted to his knowledge of newer options, despite the knowledge that these would not offer any survival benefit rather than confront the harsh reality of the situation.
The book provides examples from the medical literature of the optimism that patients with endstage cancer have regarding the efficacy of treatment versus their reality. Patients are more likely to greatly overestimate the efficacy of a treatment and its potential survival benefit. Dr. Gawande also provides a potential reason for this, noting that some people far exceed any medical predictions. Unfortunately, many patients live for a shorter time than they anticipate; therefore, the patient and the family are often unprepared for death.
Dr. Gawande offers the reader a solution: an open, frank discussion between the patient, the caregiver, and the physician can assist with understanding what the patient wants and can provide the caregiver and the healthcare team parameters to follow when end of life is approaching. He calls this a “breakpoint discussion,” which he borrowed from the Swedish health system.
In this discussion, the conversation centers on a “break point,” when the patient switches from fighting disease to fighting for other things people value, such as time with family, traveling, or “eating chocolate ice cream.” Dr. Gawande warns us that few people have these conversations, and if handled poorly, the conversation can overwhelm the patient or can ruin the trust that has been established. These conversations also take time, longer than the 15 minutes that most doctors typically can spend with their patients.
Understanding that not everyone can answer these questions, and that the answers can change with circumstances, this conversation may need to be revisited. The conversation should center on realistic expectations. The patient should be given honest expectations and should explore how far he or she is willing to go if things worsen. This book has value to anyone understanding end-of-life issues. Dr. Gawande walks the reader through the failings of our current system at handling the end of life. He provides examples of why the current system is not optimal and some glowing examples of how it can improve.
Dr. Gawande devotes much attention to hospice care and palliative care. From my own experiences working with oncologists, they often hesitate to mention palliative care or hospice to patients for fear that the patient may believe the oncologist is “giving up.” On the contrary, as Dr. Gawande highlights, a study conducted in Boston in 2010 demonstrated that patients with advanced lung cancer who met with a palliative care team in addition to usual care from their oncologist lived longer than patients who received care only from their oncology team (see also Palliative Care article on page 32). Palliative care involves experts in providing support in collaboration with the oncology care team. It does not exclude further treatments. Hospice, by contrast, prioritizes comfort and provides treatment to alleviate any symptoms but not for prolongation of life.
The take-home message from this book is, ask questions, even if they are difficult, focus on what you want, and prioritize. Establish a strong communication with the oncology team and your family, and be prepared that at some point you may no longer be able to speak on your own behalf. Face your reality optimistically, with a plan for “what if.”
Questions to discuss with your healthcare team:
- What are your biggest fears and concerns?
- What goals are most important to you?
- What tradeoffs are you willing to make?
- What tradeoffs are you not willing to make?